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Tips for Supporting the Epilepsy Caregiver


All of us in the epilepsy community are dedicated to making an invisible illness more visible — and to fostering compassion and understanding for people affected by seizures. Yet too often we overlook another critical group, namely our caregivers. These men and women deserve wider recognition and support. Sometimes they also need respite and relief. Why? Because they do so much.

Caregivers are the ones who are always vigilant, always on the lookout for the signs and symptoms of seizures. They know their loved one’s seizure triggers and seizure types. Caregivers administer medications, monitor side effects, and help create and implement seizure emergency plans. They also serve as patient advocates in the neurologist’s office, at school and sometimes even in the halls of Congress. Most of all, they provide unconditional care and acceptance to the person with epilepsy.

For those of us who want to support an epilepsy caregiver, there are ways to help. Here are five simple ideas to consider:

  • Prepare and share a meal that’s easy to microwave or reheat. Deliver it with a note from the heart.
  • Offer to stay with a person who has uncontrolled seizures, especially if you know seizure first aid and/or can follow a seizure emergency plan. You will be giving the caregiver precious time for taking care of him or herself.
  • Run errands. Offer to do something specific, such as shopping for groceries, raking leaves or mowing the lawn.
  • Write a letter or send a card. Caregivers often feel invisible in the wider community, even within their own extended families. Let them know you SEE them, their struggles and their successes.
  • Support the epilepsy cause. Wear purple in November in recognition of National Epilepsy Awareness Month. Walk or run for epilepsy research. Learn more about the challenges of living with seizures. Stand up for people with epilepsy – and the people who care for them.

If these ideas seem too simple, just remember these words: No act of kindness, no matter how small, is ever wasted, especially to the caregiver of a person with epilepsy.

Note: For caregivers who wish to connect with other caregivers online, and have resources and caregiver forums in which stories can be shared and support can be obtained from others. For those who wish to attend an in-person support group, reach out to your local Epilepsy Foundation to see if they have a support group you can join. Find out more about the support the foundation offers here.


September 28, 2016 | Categories: General

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